U.S. Paralympic swimmer Jamal Hill is raising awareness about Charcot-Marie-Tooth condition, a rare degenerative nerve disease that causes muscle weakness, decreased muscle growth, decreased sensitivity, hammer toes, and high arches.
However, it wasn’t until he was ten years old that the Inglewood native began to exhibit signs of Charcot-Marie-Tooth condition. The disease’s onset paralyzed him, and he spent many days in the hospital.
He told WBUR’s Here and Now, “Prior to that experience, I could run, jump, everything any relatively normal 10-year-old kid can. I had to relearn how to walk, [I] also had to relearn how to work my hands, how to write, how to hold pencils, hold doorknobs. I retained 0% nerve capacity from my knees to the soles of my feet, and then from my elbows to my fingertips, 30% nerve capacity.”
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He will now compete in the 50-meter freestyle S9 division at this year’s Paralympics in Paris after winning bronze in Tokyo in 2021.
The 29-year-old explained how he swims even though his muscles are numb, saying, “So in the water, I’m on a horizontal plane. Ultimately any swimmer will tell you that you got to kick from the hips. That doesn’t change. So when I kick, I don’t feel it go all the way through the toe. I imagine a little bit more like a whipping sensation, just having some faith that it’s making it there and it’ll get me across the pool.”
The go-getter attributes his current success to his parents, who encouraged him to try anything he set his mind to. Despite this, his journey to becoming a Paralympic athlete started with a secret.
“At the age of 10, I was diagnosed with Charcot-Marie-Tooth (CMT), a hereditary neurological condition that affects my peripheral nerves, making simple tasks like walking and running challenging. For 12 years, I kept this diagnosis hidden, even from my closest friends, coaches and teammates. It was a point of shame and something I felt I had to overcome on my own,” he said.
In 2018, his swim coach, Wilma Wong, noticed something different about the way he moved. “She pulled me aside and respectfully mentioned that I reminded her of someone living with cerebral palsy. This was the first time in 12 years that anyone had acknowledged my condition, and the first time I outwardly admitted that I had been living with CMT.”
Wong told him that his condition might ruin his Olympic dreams. “It was a tough conversation, one that I initially resisted. I was afraid of being labeled and judged. I didn’t want my disability to define me, let alone derail my aspirations.”
At last, Hill embraced his disability and started exploring Paralympics. Today, he has a foundation called Swim Uphill, which teaches young people of color how to swim.
According to Hill, accidental drowning claims hundreds of thousands of lives each year, given that when people are near water, they lack the comfort and expertise to escape if they manage to get in.
He acknowledged that he hasn’t yet succeeded in his goal to teach a million people to swim, “but that’s only because his mission has grown. Our real vision is to be teaching a million people a year come 2028.”
